Navigating life with limb loss is challenging. There are almost two million people living with limb loss in America. Among those who have experienced amputations, a little over fifty percent of them are the result of vascular disease, while forty-five percent of amputations are the result of trauma.
Regardless of the cause of your limb loss, the experience can be traumatic.
One of the most difficult things a person may go through is an amputation. It's a process that few people anticipate. You undoubtedly have a number of questions, whether you're an adult adapting to this new chapter of life or a parent trying to find out how to provide your child with the most amount of support possible.
If you or someone you know has experienced amputation, the journey has just begun. Experiences like amputation are life-changing. It completely alters your plans and future. These types of events, whether good or tragic, influence our perceptions of ourselves and the world.
Pain can occur when trauma happens, or we suffer a loss of any type. It is our natural reaction to what has occurred. We progress from denial to anger, bargaining, sadness, and finally, acceptance and hope at our own rate. The more you can be aware of what to expect with amputation, the better you can manage and mitigate the challenges.
One of the biggest hurdles to overcome can be managing phantom limb pain. In this article, we want to dive deeper into PLP in order to help you better understand it, identify it, manage it, and support someone experiencing it. This guide will help answer:
- What Is Phantom Limb Pain?
- How Prevalent is Phantom Limb Pain?
- How Is Phantom Limb Pain Treated?
- How Can I Help Someone Who Is Experiencing Phantom Limb Pain?
What Is Phantom Limb Pain?
The risk of experiencing phantom limb pain is one of the biggest worries for amputees or persons facing sudden limb loss. PLP is pain, pressure, or another sensation that appears to occur in the place where the limb formerly was.
It’s Different than Residual Limb Pain
Almost anyone who experiences amputation will have pain in the residual limb. Bruising, infection, nerve damage, and other issues can cause the limb that’s left behind to be in pain. PLP is different. It is pain or discomfort that happens in the part of the limb that’s been removed. The term goes back to Civil War times, but the concept was discovered back in the 1500s.
“The concept of phantom limb pain (PLP) as being the pain perceived by the region of the body no longer present was first described by Ambrose Pare, a sixteenth-century French military surgeon. Silas Weir Mitchell, a famous Civil War surgeon in the nineteenth century, coined the term “phantom limb pain” and provided a comprehensive description of this condition.”
Are you unsure if you have phantom limb pain? Symptoms of PLP include:
- Tingling and numbness as if the limb fell asleep
- Burning as if it is too close to a heat source
- Aching as if it has been overused or in an uncomfortable position
- Throbbing as if blood flow has been cut off
- Shooting or stabbing pain as if it is being prodded
Phantom Limb Pain can affect anyone who experiences limb loss.
How Prevalent Is Phantom Limb Pain?
It's believed to be caused by signal interference between your spinal cord and brain. Because everything changes about the limb during amputation, it affects the way the brain understands the signals nerves are still sending and the lack of signals from missing and severed nerves.
Approximately 80% of amputees have some form of phantom limb pain. PLP is more prominent in women than men.
How Long Will You Be Dealing with Phantom Limb Pain?
PLP is most frequent within the first six months after surgery, but it can last for years in rare cases. Medicine and physical therapy are used to treat these feelings.
Many people are ashamed and unwilling to inform their doctors about PLP, but because there are so many reasons and treatments, it's crucial to tell your doctors and preserve careful records. You should include:
- What sensations you’re feeling: Is it pain, tingling, numbness, or something else? You want to tell your doctors and rehab team as much about what you’re feeling as possible.
- When the PLP is the worst: Does it seem like it is worse early in the morning, late at night, after physical activity, or when it’s raining? Those are things your doctors need to know.
- What seems to trigger it: What kind of activities or experiences are you having right before the phantom limb pain commences?
- How severe is it: Is your phantom limb pain minor or becoming a major inconvenience?
Phantom Limb Pain Can Impact Your Life
PLP can certainly negatively impact your quality of life in many ways:
- Phantom Limb Pain can cause you to sleep poorly.
- Phantom Limb Pain can affect your desire to leave your home.
- Phantom Limb Pain can make traveling difficult.
- Phantom Limb Pain can lead to fatigue and frustration.
Ultimately, the effects of Phantom Limb Pain are a potential contributing factor to limb loss depression. We wrote more about recognizing the signs of limb loss depression in a previous article.
Many amputees and limb loss survivors experience depression and grief. Having these feelings doesn’t make you weak. They are a natural reaction to significant loss of any kind.
Treating your PLP is one step toward either preventing or recovering from limb loss depression. Fortunately, although there is still some mystery surrounding phantom limb pain, it is treatable.
How Is Phantom Limb Pain Treated?
There are essentially two categories for treating phantom limb pain: pharmaceutical and therapeutic. Per the Amputee Coalition:
“For PLP pain management, you will take medications directed specifically toward interrupting the pain signals in your brain or spinal cord as well as using certain non-medication therapies, which also work on your brain’s interpretation of these signals.”
Here is a breakdown of some of these treatments.
Pharmaceutical Treatments for PLP
Some of the medical treatments for PLP include:
- Nonsteroidal anti-inflammatory medications (NSAIDs) and acetaminophen (NSAIDs)
- Opioids (narcotic pain medications)
- Antidepressants
- Muscle relaxants
- Beta-blockers
- Anticonvulsants
The goal, of course, is to find the right combination of medications that work for you while producing as few side effects as possible. You want to work with your doctors and rehabilitation team to ensure you have the best solution that affords you the quality of life you desire.
Therapeutic and Non-Pharmaceutical Treatments for PLP
Some of the ways to treat PLP without relying on medication include:
- Neurostimulation: “Neurostimulation therapies include invasive and noninvasive approaches that involve the application of electrical stimulation to drive neural function within a circuit.” - The Mayo Clinic.
- Acupuncture: Acupuncture is a traditional Chinese therapy for treating a variety of health problems and symptoms, including pain. At various "acupoints," an acupuncturist places very thin steel needles into the patient's skin. The needles restore the body's energy, or qi, and cause natural chemicals to be released to combat the ailment or symptom.
- Biofeedback: Biofeedback is a mind-body therapy that can help you feel better physically and mentally. A practitioner will utilize painless sensors to measure certain body systems during a biofeedback session. You'll see the outcomes on a screen and then experiment with different ways to change them. You'll be able to make modifications without the equipment with experience.
- Massage: Therapeutic massage is a broad term that refers to any sort of massage that relieves pain, relieves stress, or addresses a specific issue, such as phantom limb pain.
- Meditation: Meditation trains the mind to focus on calm, attentiveness, and spiritual goals. The practice has the potential to improve one's physical and mental well-being.
- Mirror Box Therapy: Mirror therapy, also known as mirror visual feedback, is a pain or disability treatment in which one side of the patient is affected more than the other. For around 20 minutes each day, you view the undamaged leg in a mirror while conducting movement exercises. The brain is tricked into thinking there are two healthy limbs because of the mirror.
- Transcutaneous Electrical Nerve Stimulation: Low-voltage electric currents are used in therapy to relieve pain. The electricity is delivered to the nerves via a tiny device. TENS therapy reduces or eliminates pain perception.
Virtual reality, music, imagery, and other methods are also often used to help patients find relief from PLP. In many cases, as time goes on, and you adjust to your new normal, phantom limb pain will go away more or less on its own.
How Can You Help Someone Who Is Experiencing Phantom Limb Pain?
If you are reading this because someone close to you has experienced sudden limb loss and is now reeling from its many effects, including PLP, you may want to know what you can do to help. We have written about that in more detail here.
There are a variety of resources available to those who are living with limb loss, including in-person and virtual support groups, specialized medical advice and support, children’s camps, adaptive sports groups, and many more. Do not hesitate to ask us for help and to point you in the direction of resources that can be life-changing.
- Be Present: Just being there for someone with phantom limb pain is helpful.
- Be a Listener: Don’t try to solve their PLP. Be a listener first.
- Be a Helper: As much as a person who has suffered limb loss needs assistance, offer it freely.
- Be a Driver: Offer rides to see doctors, rehabilitation specialists, and support groups.
- Be a Friend: When a person about whom you care has experienced a life-changing event, they need their friends to still be friends.
Orthopedic Appliance Company
For sixty years, we have been serving people who are often near the beginning of their limb loss journey. We provide the highest-quality prosthetic devices to help restore your mobility and give you the tools you need to establish a new normal. We have met countless people who have turned their limb loss into a positive and are making the most of life.
If you are working with a rehabilitation team to determine what kind of prosthetic device would work best for you, we are here to help. Contact us today for more information about artificial limbs in the Asheville area.